Focus on Health

The end of life: Part III

Thu, 08/21/2014 - 9:30am

    See Part I here and Part II here.

    Whenever I do something for the first time, I often get a little bit nervous. What if I do it wrong? What if somebody sees me doing something stupid? What if I fail?

    After all, I've never done this before.

    The first time I pitched in Little League I was sure I would bean the batter or somehow not be able to get the ball across the plate. As it turns out I could consistently throw strikes, though I didn't throw very hard. I would do well until the third or forth inning when I would start to get shelled by capable hitters.

    As a medical student and resident in training, I often had that feeling. Even with a teacher standing by, I knew the consequences of a mistake on my part could be disastrous. Fortunately for my patients and me, I did pretty well.

    Filling out an advanced directive can be a bit like that.

    There are many reasons people don't fill out an advance directive. Some have never heard of it. Others don't know where they could find one. Many feel it simply does not apply to them. Some worry that they might screw it up.

    The first time I was actually involved in filling out an advanced directive was when my mother made her last trip to Maine for a visit. She had been diagnosed with Parkinson's disease, but was still fairly active. We had a great time walking along the coast and enjoying all that Maine had to offer. Knowing that her Parkinson's disease would likely present some very challenging times ahead, I asked if she had filled out a living will or an advance directive. She mentioned that her doctor had made the same suggestion and that she might even have the form somewhere at home in Minnesota. Since she was like most people, she had not really gotten around to filling it out.

    Marie Fleming Fourre was then a feisty little white haired woman. She had raised a slew of kids and was intimidated by no one. As my Uncle Pete (mom's younger brother) would say with great admiration, "She was a worthy opponent."

    Given that, I tentatively asked if she would be interested in working on it with me during her visit. She looked up, paused and said, "I would like that."

    The first thing I had to do was locate the form. I made some phone calls and found one at the hospital, which I brought home. After dinner we sat down and started to make our way through the form, section by section, line by line.

    She asked great questions. "How does a breathing machine work?" "Why would you put in a feeding tube?" "When would you decide not to have antibiotics?" "Can I change my mind?"

    We filled in each section as best we could. Sometimes the answers were clear cut. Other times the area seemed pretty gray and our answers were equally unclear. Most importantly, we had a great conversation about what her wishes were for the end of her life and what goals were important to her.

    At the end of the form were three lines for the names of the individuals who would make healthcare decisions for her if she was no longer able to make the decisions for herself. I was filling out the form for her so I looked up and asked, "Who would you like first?"

    She did not hesitate. "Gigi," she said.

    Now Gigi was a great choice, but I kind of thought I would get that slot. "Then who?" I asked.

    "Tommy."

    Seriously? I didn't even make the top two?

    I looked up, "And the third?"

    "Kate."

    You've got to be kidding me, I thought. I put in all this time and I didn't make the cut.

    As it turns out, her plan was perfect. A few years later as my mother was struggling with end stage Parkinson's disease, our family was called upon to make several decisions over the long course of her illness. The first contact was generally one of the three listed on the form. Invariably they would call me to review what was going on. Fortunately, we were able to reference the discussion I had with my mom and the notes we had made in the directive. We were always on the same page. The decisions were easy because we all knew her wishes.

    Today you can get a copy of the advance directive from your doctor's office or simply Google, "advance directive Maine" for an electronic version. If you don't have a healthcare worker in your family and you would like some help filling out the form, you can call your doctor's office and they will help you with the process.

    Just do it. You will figure it out. You will do a great job with it. You, and your family, will be glad you did.